Tag Archives: ableism

Linkanikos

Another link round up from the lovely Emily. With luck, I’ll even have a chance to read them all soon. Probably whilst nursing.

Hello all.  How’s you?  Me, oh you know…  Now we’ve gotten the pleasantries out of the way, down to linkage.

At Big Fat Blog, in Scotland, a couple might have lose four of their seven children because their parents “failed to help them slim down.”  There’s email addresses at the bottom of the post you can use to help support keeping this family together.

Wikileaks revealed that the U.S has been lobbying against breastfeeding campaigns in the Philippines.  PhD in Parenting wrote about Evenflo breast pumps, and how a company goes from good to very, very bad.

Oregon Health & Science University researchers have developed a new contraceptive that is more focused and safer, controlling mechanisms that result in the release of an egg.  Intriguing.  s.e smith at Bitch on pop culture representations of parenting with mental illness.

At Tiger Beatdown, Sady wrote a lovely post about feminism, critique and feeling virtuous.

Massive unemployment: proof capitalism doesn’t work.  Another sad sign of the times – climate scientists establishing a legal defense fund because of all the lawsuits they’re facing.

In Greece, the rebel dog Loukanikos barked at some police offices in Syntagma (Constitution) Square.  Arwyn has her Doctor Who fandom, I have stray dogs in Athens.  Ok, I have Doctor Who too.

And speaking of, Doctor Whooves is feeling impatient.

Arwyn again: The dear (pony-fied) Doctor was obviously not in postpartum baby-land. As Kareena says, babies distort the space time continuum. Truer words ne’er were spoken!

That Stinks!, or, disability exists at the intersection of the individual and society

Pregnancy1 is a blissfully neurology-stabilizing state for me. Not only do my moods stabilize (auto-comparatively…), but my migraines decrease significantly, both in severity and frequency. Which has been allowing me to take risks and perform tasks I usually don’t or can’t or am much more wary of — which in turn has me thinking about migraines and chronic illnesses and the social model of disability.

Note: whether or not migraines count as a disability per se may be up for debate (though I’d be more likely to say, are up to the individual migraineur’s2 situation and identity), but regardless, I’m going to use my experience with migraines here as illustrative of disability in general and an explanation of the social model of disability — both because I have at times in my life been disabled by migraines and because I cannot fully separate my bipolar disorder from my migraines3 (though one is more likely than the other to be recognized as a disability). The extent to which the following is translatable to any other experience of disability or chronic illness will vary, and I do not mean for it read as The One Truth About Disability. But I will say that in my talkings with others with disabilities and my readings of other disability activists, it shares enough similarities to be valuable as an illustration.

Even while pregnant, though, I am at risk of them: my migraine status at any given time (vulnerable? migraineous? active migraine? post-migraine hangover? low risk?) is always in my mind, and is always something I consider, however briefly, when planning my day.

That is not disabling.

My home, even in pregnancy, has differences from a non-migraineur’s home4, differences so ingrained I don’t even think about them the vast majority of the time: you will find here no scented products5, no striped or strongly contrasting color-schemes or curtains or clothes in our closets, no checkerboard tile patterns, no battery-operated noise-making or light-flashing toys, no energy-efficient prone-to-flicker long-bulb fluorescent lights6, no TV on in the background, no wood-burning fires (even if we had the fireplace), no slatted blinds (and very few window screens), no — for all people find this the hardest to believe — chocolate.

None of that is disabling.7

There are certain behaviors inside (and outside) my home that I engage in (or, more frequently, refrain from engaging in) because of my migraines: I rarely play video games anymore (sob!); there are many movie/TV scenes and some entire movies I do not watch, or do not watch unless very solidly in a Low Risk state (which I will likely move out of if I do watch said scenes); I don’t cross my eyes or spin around or watch others (even my child) move too rapidly in a repeated motion, such as jumping on a trampoline; I sleep as regularly as is possible with a child and a writing compulsion and a brain that often doesn’t cooperate; I don’t eat chocolate (or licorice or anise), even when available and offered and oh-so-tempting.

These are frequently annoying, but they are still not disabling.

When I have a migraine — a full-on, active migraine — I am incapacitated. I am in pain (to put it mildly), nothing in my brain works quite right, my word recall goes to shit, my cognition deteriorates (and not solely from the pain), my senses go hypersensitive and screwball (think apples that taste like sunscreen, voices that fall like hammers, scents that smell like pain, lights that I shy away from like a vampire from the sun), and I am more or less unable to do anything productive, enjoyable, or, well, anything except exist and wish I didn’t and wait for it to go away. These happen sometimes no matter how many precautions I take and reduction behaviors I engage in.

That is, in someways, disabling — but it’s also just my life, and my luck.

What is disabling, what disables me and limits my life in ways I do not find as easy to adapt to and integrate, is these:

cigarette smoke, both primary as I’m trying to get from my car to the store, and secondary as the chronic smoker walks by my restaurant table

perfume and cologne, dabbed or drenched on the person seated behind me on the bus

the laundry aisle at the supermarket — most days when non-pregnant, I can’t even walk down it without holding my breath (and sometimes, not even then)

the pattern in the carpet that seems to shift before me, that I have to walk over (eyes closed) for 10, 100, 500 feet to get to my destination

strobe lights in every dance hall, ever

bass lines so loud they can be felt without eardrums — in bars and trendy restaurants and the car driving by my house and played by the neighbours in our first apartment building

automated bathroom odor-maskers and hand soap whose scent lingers for hours, even after getting home and washing it off — twice

that one light in every classroom, every mall, every not-ridiculously-overpriced grocery store that’s on the fritz and flickers constantly

These are triggers I cannot control. These are triggers I risk exposure to if I wish to enter public at all, triggers that can make the difference between my accomplishing my goals in public for that day or not, can make the difference between being able to function again the following day or needing to hide in the dark quiet praying for death and/or sleep.

And no, I don’t expect every space to be entirely trigger-free, to look and sound and smell like my house. I would and have and will advocate for reasonable accommodations, including scent-free places, public smoking restrictions, sound limits, improved lighting, and so on, but it would be unreasonable for every possible trigger to be removed entirely from public spaces.8 The point is not that society must change in every conceivable way that would benefit me (though really, a few small changes is not too much to ask). Rather, the point is this: it is not until I step out of my home that my tendency toward migraines changes from something I deal with without much thought or bother to something that hinders my ability to go about my life.

That is when this part of me — my predisposition for migraines — becomes a disability. This disability is not inherent in my neurology, for all that my neurology not the same as the majority’s (and is frequently a pain and an impairment): no, the point it becomes a disability, that I am disabled, is at the intersection of my self and my society.

That is what I mean when I speak of the social model of disability — and why I’ll keep banging away at society’s role until ableism both individual and systemic is no longer the culturally accepted default.

  1. Or at least, both times I’ve been pregnant long enough to notice any effects.
  2. Migraineur: one who gets migraines.
  3. For three reasons, in increasing compellingness: there is a high overlap between people with mood disorders and people who get migraines, more so than either appear alone in the general population; the same drugs are often used to treat/prevent both; and, for me, stability in one part of my neurology goes along with stability in another — that is, when my moods are better, my migraines decrease. Whether or not it’s true in anyone else’s life, for me, the two are inextricable.
  4. Though I will say that every migraineur is different, with a different set of triggers, and so what is true of my migraine-reduction needs may not be true of someone else’s.
  5. No candles, no deodorizing sprays, no incense burners, no essential oil diffusers, no “aromatherapy” soaps or lotions or dryer sheets, and only unscented dish soaps, bath soaps, hands soaps, and laundry detergents; no shampoo at all, because it’s so impossible to find one that both doesn’t reek and does work (thank you baking soda and apple cider vinegar).
  6. I do OK with some compact fluorescents, as long as they’re not the only light source in a room.
  7. No, not even the lack of chocolate.
  8. If nothing else, I have no desire to be the focus of a mob wielding broken ceramic mugs blaming me for the banishment of every chocolate cafe.

NPFP Guest Post: If wishes were horses…

Welcome to RMB’s Naked Pictures of Faceless People, a series of guest posts from diverse anonymous bloggers. (Read more about NPFP’s origins.) These are the posts that are jumping to get out of us, but for whatever reason — safety, embarrassment, conflict of interest, protection of loved ones’ reputations or feelings, or so on — we don’t or won’t or can’t post at our own blogs. Anyone, whether blogger or reader only, is welcome to submit or discuss a potential post by emailing me at arwyn at raisingmyboychick dot com.

Trigger Warning: There is a trigger warning on this post for mentions of self injury and related coping mechanisms.

If wishes were horses…

Tonight is a bad night. It is well past midnight and while my two-year-old is soundly asleep in the bed next to me, I am wide awake, my thoughts a jumble of flashbacks, my body remembering the years of torturous abuse it suffered at the hands of “friends”. I desperately want this to end. Between memories, my mind goes back to all the ways I have coped in the past – heroin, cutting myself, anorexia, suicide attempts. It takes every ounce of strength I can muster to stop myself from doing something drastic. I keep reminding myself that if something were to happen, that if this was the time I finally went too far and my body gave up on me, that this beautiful, perfect angel sleeping next to me would be left alone and scared and unsafe in our apartment until some one noticed I was missing and came to find me.

I wish there was some one I could talk to about these feelings, but there is not. Sure, I go to counseling and my therapist is amazing, but I can never be truly honest with her. You see, I have already been labeled as deficient by society. I am young, poor, single, queer and mentally ill. While I will readily admit that I have white privilege, I doubt this is enough to compensate for the seemingly insurmountable mountain of crap I have working against me. I am scared that if I were to ever be truly, completely, 100% honest about how I feel, about what I struggle with, they they would take my baby, my Reason, away from me. There are days when the depressed part of me thinks this might not be such a bad thing. The depressed, traumatized part of me injects doubt into every facet of my life, telling me that I am shitty parent, that my child would be better with some one who doesn’t have the struggles I have.

This message is, of course, reinforced by every image of parenting that surrounds me. White, married, heterosexual, neurotypical, upper middle class is touted as the ideal, the norm. And of you are not those things, well then you better keep your legs closed, ho. You have no business adding another leech to the system. It breaks my heart to write that, to recognize that that is what my beautiful, kind, compassionate, funny, creative, loving little person is reduced to: a leech. All because of who I am and the choices I have made. I also worry that there are components of this that are genetic and that I have doomed by baby to someday go through the hell I am going through right now. Just thinking about this is almost more than my heart can bear.

I am sick of living this life. I am sick of denying my pain, of pretending like it doesn’t exist. I should not have to choose between being able to keep my child and healing the very real, very deep emotional wounds I carry. I am sick of being made to feel like less than by a society that tell me that my parenting, my body, my being is defective simply because of the way my brain chemicals work.

I wish this story had a happy ending. I wish I could say that I pulled myself up by my bootstraps like I have been urged to do so many times by clueless people. I wish, I wish, I wish… sadly, it seems like wishes are all I have.

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Please support the Naked Pictures of Faceless People project by commenting on the posts. Comments which attack or attempt to guess the identity or any aspect of the identity of the blogger will be deleted, however. Protect and respect this space as though it were your own work on display here, naked and faceless.

Anonymous comments are welcome on NPFP posts. Simply put “Anonymous” or any pseudonym in Name, and either your own or a fake email addresses (ex me@me.com) as the email. NOTE: If you have a Gravatar associated with your email address, it will show up even with an anonymous name, in which case please use a different or a fake email address.

NPFP Guest Post: Surviving Abuse with Disabilities

Welcome to RMB’s Naked Pictures of Faceless People, a series of guest posts from diverse anonymous bloggers. (Read more about NPFP’s origins.) These are the posts that are jumping to get out of us, but for whatever reason — safety, embarrassment, conflict of interest, protection of loved ones’ reputations or feelings, or so on — we don’t or won’t or can’t post at our own blogs. Anyone, whether blogger or reader only, is welcome to submit or discuss a potential post by emailing me at arwyn at raisingmyboychick dot com.

Trigger Warning: There is a trigger warning on this post for references to child abuse and violence against people with disabilities.

Surviving Abuse with Disabilities

I am an abuse survivor, although I don’t like to use the word “abuse”. I was physically and emotionally hurt by my parents. I am also disabled. Autistic, among other things. These two things may not seem like they have anything to do with each other, but they do.

First of all, people with disabilities are more commonly victimized to abuse than the general population. This may be for several reasons that I do not understand, but it is true. Secondly, disabled people may be less likely to report abuse, for example because they do not have the skills to communicate what happened to them. These are both points that warrant attention, but this is not what I’m going to write about now.

What I’ll write about is when abuse is excused by a person’s disability. My parents beat me on quite a regular basis, and more often said that I was worthless and that they were only parenting me because no foster home would want me. These actions would’ve been considered abusive if they happened to a person without disabilities, but in my case, almost everyone — even my therapist — contends that my autism is the root cause of it all.

You see, I had behavior problems as a child and young adult. I had frequent meltdowns in which I would scream and yell and sometimes, as a child, act physically aggressively towards my parents. Even though no one says that this excuses the actions my parents committed, people often do say that it is my autism that is the main problem, and that, if my parents had sought help for my autism — which they didn’t, since they were in denial –, nothing would have happened.

Even in abuse survivor communities I sometimes hear talk as if my disability is at fault instead of my parents having to take responsibility for their actions. Once, I wrote to a support group about being triggered by an article that revealed that children with behavioral conditions are more likely to be victimized to abuse, and I was informed repeatedly by a fellow member that people needed to protect themselves and others from the hurt done by children with behavior problems. This gave me the idea that my disability was truly at fault for the abuse. When someone stuck up for me and said the other member’s words were inappropriate and that abuse by parents is never the child’s fault, this person was reprimanded by the group owner.

I have internalized a lot of the logic that says that disability makes abuse understandable. Survivor guilt is the result, but a more complicated kind of survivor guilt than that experienced by most survivors of trauma and abuse. “It was not your fault,” simply doesn’t make sense when people go on to blame an integral part of who I am.

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Please support the Naked Pictures of Faceless People project by commenting on the posts. Comments which attack or attempt to guess the identity or any aspect of the identity of the blogger will be deleted, however. Protect and respect this space as though it were your own work on display here, naked and faceless.

Anonymous comments are welcome on NPFP posts. Simply put “Anonymous” or any pseudonym in Name, and either your own or a fake email addresses (ex me@me.com) as the email. NOTE: If you have a Gravatar associated with your email address, it will show up even with an anonymous name, in which case please use a different or a fake email address.

Arwyn’s Rules for Blogging

Every couple weeks or so I run across another list of 5 or 10 or 40 Rules of Blogging. Sometimes they’re called Blogging Tips, sometimes Tricks to Make You a Better Blogger, or, my favorite, Laws of Not Sucking at Blogging. But they’re always numbered, bulleted lists, and I always break at least half of the rules, and go away grumpy and more cynical than ever. The obvious solution? Make my own!

  1. Write long, intricate posts. Never write less than 500 words; see if you can go for 1000, even 1500 or 2000 or more. Make as many points as you want to; don’t split a tangent off into another post if you can possibly make it fit into this one.
  2. Make your sentences as long as possible; learn to love the semicolon. Let at least one paragraph per post start with the most round-about intro sentence you can think of: let this sentence be at least thirty words long. Fifty is better.
  3. Avoid numbered lists and bullet points like last year’s turkey leftovers. Better yet, like they’re medium-rare day-old buffet burgers — and you’re a raw-foods vegan.
  4. Unless you’re being paid to sell something, pretend the letters SEO stand for Search Every Orifice, and immediately click away from any blog or post with that in its title.
  5. Demand more from your readers. Expect them to click and read the links you leave explaining complex concepts. Require them to use their minds to engage with your topic; if you must set analytics goals, make it be that they spend a minimum of four minutes per post, and that they then immediately click away to learn more.
  6. If you haven’t bothered to learn its versus it’s, your versus you’re, or exactly what to do with that semicolon I just cajoled you to use, by all means, spend half an hour reading about grammar and do better. But if the word “grammar” strikes fear in your heart, if you’ve read the rules a hundred times and still don’t get it, if your brain doesn’t work in a way that accords with highfalutin’ rules of grammar, if it’s hard enough to sit up and type at all when your head’s in a daze from the pain: fuck ‘em. Write anyway. The world needs your words, and it doesn’t need you to be stopped by rigid allegiance to arbitrary agreements of where the apostrophe goes in “mamas’ night out”.
  7. The title is your place to get creative, eloquent, lyrical, dorky, or quote obscure pop culture. Or not — make it boring as hell if it’s 3am and you just want to publish the damn post already. Pretend search engines don’t exist when titling your work, unless you’re writing a review of the latest Canon PowerShot SD4000 IS IXUS 300 HS/ IXY 30S, or the chromatic aberration and barrel distortion of the Sigma 70-200 F2.8 EX DG OS HSM lens used in conjunction with the Nikon D3s, in which case you are probably not reading my blog (unless you are Lisa: hi Lisa! Thanks for the part numbers!).
  8. Bold is for emphasis only. If you wouldn’t speak those words louder or with more gravitas, if you don’t want your reader’s eye to linger there, if you don’t want them to feel you are shouting that sentence, for the love of Calliope, don’t bold it. Definitely don’t bold short thesis statements; your readers are smarter than that. And if they’re not, you don’t need ‘em.
  9. Pictures are a requirement — if yours is a photography blog. Otherwise, pick pics only if it pleases you or is absolutely necessary for the post.
  10. Do not ever, ever change your writing because of numbered lists of blogging tips.

…so perhaps this list won’t get your post to come back as the first entry for “cosleeping safety” in a Google search, and if that’s your goal, go forth, and read many more lists that are rather more serious than this one. Study SEO (the search engine optimization one, not the sexual assault one). There are good, valid reasons for some of the traditional recommendations, and if that’s your thing, may it bring you many Google hits and spread your gospel. I have friends who will pinch me viciously if I imply that the choice is between paying attention to The Blogging Rules and having meaningful content; that’s not my point. (Not quite, anyway.)

Rather, I hate these lists because they assume a monolithic blog reader, and for that matter a monolithic blog writer. I would be undone if I tried to write under 500 words a post, as is traditionally recommended. I write 500 word intros. And yet, you people read them, and read to the end, and respond to the ideas. 500 words isn’t enough for nuance, for introspection, for really examining a topic from as many angles as possible; it’s barely enough for an abrupt intro to most of the topics I write about. And yes, I use extraneous words, I use excessive rhetorical devices that lengthen my posts, I have an addiction to mostly unnecessary footnotes that calls for the help of a twelve-step program, but still, I cannot imagine that most of my work “should” be cut in half, or less.

I also refuse to believe that no one online is looking for posts of more depth, that “no one” will read a post with longer paragraphs, with fewer bolded thesis statements, with rambling introductions and run-on sentences. That some, highly studied (highly privileged?), goal-oriented groups of readers will not stick around for longer posts doesn’t mean the desire isn’t there; perhaps us long-winded bloggers serve niche readerships, but why should we abandon those who are seeking just what we offer to cater to an audience that reads-and-leaves anyway?

I’ve tried, for some of my posts, to implement aspects of SEO. Sometimes it’s because I really would like to get to a wider audience, people who might like my style but haven’t found me yet. But usually it’s because I think I “should”, that I’m somehow a “bad blogger” if I don’t. Usually it’s because I’ve read a how-to-blog list recently. And I wish I could figure out how to, as some promise is possible, keep my voice and keep my morals and increase searchability, if only because having more tools, more skills, is good. But I’m bad at it. And I have no desire to do the things that might make me better, and what’s more, trying to do so creates even more anxiety when already it takes me two hours to write a post and three, at least, to tweak it and edit it and convince myself to just hit publish already. Telling me I “should” do SEO is intended to get my voice heard farther afield, but it ends up silencing me.

So here are my real rules for blogging. I’ll even put them in a numbered list, as is traditional:

  1. Write.
  2. Publish.
  3. Figure out what you want out of blogging, then figure out how much time and energy to devote to achieving those goals, and then do it — or not. This step is optional.
  4. Repeat steps 1 and 2 indefinitely.

Congratulations, you’re a blogger.